As an ALS caregiver, I find solidarity in others who walk a similar path

I recently listened to an episode of Oprah’s podcast featuring Emma Heming Willis, whose husband, actor Bruce Willis, was diagnosed with frontotemporal dementia (FTD). She wrote a book called “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.”

FTD and ALS are closely related: About 15% to 20% of people with ALS also have an FTD component. My husband, Todd, doesn’t, but even so, I found so much in her story that felt familiar because ALS is also a devastating progressive illness.

Heming Willis described the day she and her husband went to the doctor. She said they went for “our diagnosis.” That struck me. She didn’t say his diagnosis — it’s our diagnosis. Anyone who’s lived with a progressive disease understands that it brings loss and grief to the entire family.

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“You described living with this disease and the grief that comes with it as death before dying,” Oprah noted. “How have you learned to live with this kind of prolonged grief?”

“You just do,” Heming Willis replied, adding that talk therapy has helped process it, but the grief is always there.

That’s been true for me, too. The sadness never fully goes away, but you learn how to live with it because you have to.

Heming Willis said she was alarmed when her husband’s neurologist told her that caregivers are 63% more likely to die than those who are not in that role. “I am not gonna have my children lose both of their parents,” she said.

That has been a resounding mantra in my head over the past 15 years since Todd was diagnosed with ALS. Not just the idea of taking care of my health so my life isn’t cut short, but also doing what it takes to be the mom I want to be. For example, I can’t go without sleep indefinitely and expect that I’ll be able to parent well. For two years, I was up and down with Todd at night, getting increasingly sleep-deprived to the point that I didn’t want to go on. We finally started fundraising to hire nighttime help.

Heming Willis emphasized the importance of caregivers seeking help. Even though she and Bruce had the means to hire caregivers, she still felt like she should do it all herself. She finally hired help and was able to step back into her role as Bruce’s wife rather than his caregiver.

The main takeaway of her book is a call for caregivers to ask for help and not do it alone.

But for those of us who don’t have extensive financial resources, it’s not that simple. In the online caregiver groups I’m part of, I read stories from caregivers who do ask for help — and sometimes, heartbreakingly, that help doesn’t come. Extended family members may live far away, have their own obligations, or simply not step up.

Some families are able to fundraise to hire help, but that depends on having a support network willing and able to contribute and being able to find caregivers. Unless you have deep pockets to offer a high salary with benefits to a team of caregivers, it’s not easy to find consistent, high-quality help. For some, the only option ends up being a nursing home. But because Medicare doesn’t cover this care, it can be a financially devastating choice, requiring families to exhaust their retirement savings before qualifying for Medicaid. And it can be difficult to find a facility that provides the level of care someone with ALS needs.

Still, I appreciate the podcast because it sheds light on what many caregivers live with every day. Hearing someone else talk about the same struggles makes me feel a little less alone on my unexpected journey.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.